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Posted 11/14/2011 4:26 AM (GMT 0)
things are becoming (how do i put this) a disapointment i was so excited about the surgery and now that i got it life seems slow i cant do a lot of stuff with out getting tired i miss eainng junk food all the time actually i miss eating i dont have an appitite like i use to my stoma leaks once every 2 days  and everytime i sit up from laying down things are blury (it my medicine) but it is still scary i fainted once because of it and now evrytime i get up im scared it will happen again. Imstill glad i got the surgery but so much is going on since i got the loop mucus comes out of my rectum like10 times a day and when i goi never known when im really finished plus it is painfull .

when you had your surgery was there a time like this in your life where you thought why did i even go through with the surgery?? or is it just me?! thanks for taking the time to listed to me tlk about this .  

Posted 11/14/2011 7:51 AM (GMT 0)
Hi Jackie I am a little confused, do you mean your stoma only works once every 2 days ?
I am unsure about the mucus from your rectum, although I had a test to see if my bowel was open and healed, and since then I have had a leaky rectum too. maybe someone who is a little more knowledgeable can help ?

I hope so, sorry I am not more help. Maggie
Posted 11/14/2011 8:06 AM (GMT 0)
Jackie the mucus is normal, we all have that, it means the rectum is still functioning dont qorry. Your energy is comming back. I had terrifics exhaustion for weeks because of tapering off the prednison. Also moving ths mucus out will become not painful. Appetite will come back and you can add foods gradullay. With junk food i try to tell myself to have respect for my small intestine because it is such an amazing thing and only give it healthy unprocessed food to deal with. But i did do some ben&jerrys last week ... :-).
Posted 11/14/2011 12:06 PM (GMT 0)
You're still in recovery, it makes sense that you're kind of down -- at first you were better, and then you had a setback and had to go back in the hospital, and now you're worn out. I know it's hard, but you need to be patient and take care of yourself. You're not going to feel like this forever -- you will get better, you will be able to eat more things.

I wonder about two practical things reading your post: 1) Have you seen a stoma nurse to get help with the leaks? You should not have to have them that often. You could also post here exactly what you do to change your pouches -- the products you use, the order you do things, etc, and we might be able to help.

2) What is the med that's making you faint and blurring your vision? Have you talked to a doctor about it? That doesn't sound right, and you may need an alternative. It's also possible that the med is contributing to your emotional state if you're not responding well to it.

Hang in..... this is a big deal and pretty overwhelming. I definitely felt overwhelmed sometimes; its' part of the process....
Posted 11/14/2011 1:42 PM (GMT 0)
the medicine that causes blured visio is Diphen 2.5mg i take 2 twice a day . yesterday i looked at the side affects in big letters it said blured vision :(
rarleyseen my stoma works everyday i just have leaks 2x a day.
b'dereh- its REALLY painfull it's like my buthole is going to fall off that still is normal (i kinda hope so because i dont want anymore problems)
Blueglass -thanks you help me SO much to get through this !!!! from day 1 :D
Posted 11/14/2011 4:01 PM (GMT 0)
Jackie, I just looked up diphen and it says that vision problems are a serious side effect where you should call you doctor immediately. Please call you doctor and don't take it anymore! What are you taking it for? Is it for allergies?

Glad I've been able to be helpful to you, and I hope things start getting better for you soon.
Posted 11/15/2011 5:25 AM (GMT 0)
i talked to my nurse today and told her about the side affects and she told me its because i havent been drinking enough water. it isn't for allergies i't to help with thickining up my stool because regular imodium doesn't work
Posted 11/15/2011 2:57 PM (GMT 0)
Does this med work for your stool? I didn't realized at first but diphen is benadryl --I used to take it to sleep or before remicade infusions to prevent allergic reactions. I can't imagine being on it all the time, as it makes me so drowsy. Is it working to thicken your stool?

Definitely drink more water..... that's always a good thing.

I still worry about the blurred vision..... if it doesn't go away w/the extra water, definitely call the medical people again....
Posted 11/15/2011 6:11 PM (GMT 0)
The benadryl is probably adding to the exhaustion. And honestly you tried to do way too much too soon! I think you just need to really rest up and allow some time.
I have no idea what is causing your leaks, this early I would think its probably that you are cutting the hole the wrong size.
Please post the way you apply and then we can see what might be wrong!
Posted 11/15/2011 8:23 PM (GMT 0)
Jackie why do you need to thicken your stool now? When you have a jpouch, then try to thicken your stool, but honestly, when you have a stoma and bag, thick stool is only going to cause leaks. That's what my doctor said, because my stool was too thick he told me to keep it fluid while I still have the stoma. Buttermilk helped, (and chocolate :-) )
Posted 11/16/2011 1:35 AM (GMT 0)
Jackie, I just saw your post. If it is any consultation I am feeling the same way. My mom and husband have watched me cry several times this week. I am still having trouble seeing the good in my surgery. I believe the pain meds, tapering of steroids, and exhaustion from difficulty sleeping due to stoma/pain are contributing to my emotional state. I am having mucus plus blood coming from my rectum. Also, ALOT of rectal pain. My doctor says this is normal and will occur off and on. It is still annoying and uncomfortable. I visited a my stoma nurse today b/c I was noticing some bleeding, and having soreness. She accessed my stoma, helped find a comfortable fit with my wafer, etc. It would probable benefit you to see a stoma nurse. When I was leaking it was b/c there was an uneven area in my skin. It was easily fixed by adding some type of extra paste thing. My appetite was also very bad in the beginning. I figured out it was due to my pain medicine. Once I changed the medicine my appetite was completely back! I am eating SO much now. Probably, more than I should. :) Anyways, I hope this helped you some. Everyday has been different for me emotionally. I realized if I try to leave my house some it helps me cope with things a little better. I usually get the blues at night time. Take it one day at a time. That's what I am trying to do.
Posted 11/16/2011 6:42 AM (GMT 0)
thanks i have a doctors appt. this thursday 11/17 ill askmy doc.why is it suppose to be think it is SO HARD TO DRINK 8 GLASSES OF WATER i know my doc. will be upset buti honestly try my hardest the things i use to eat everyday pb&j resses i havent had the taste for it since my surgery and i force my self to eat the pb&jactually anyfood is most of the time a forcefull thing and i dont know how long it been since i had my every 4 mugs of tea. i drink boost because i know im deffinetly not geeting all my calories in a day. i will hopefully rember to ask my doc. about my appitite and if i could get a medicine change + that diaphen has me seeing double or vision get black or legs woble im suppose to take it 2x a day 2 pills but i only take it once a day and that scres me now that i know its blurred vision i think that contributed to me fainting a week ago and i deffinetly dont want to faint at school or in public.
Posted 11/16/2011 1:35 PM (GMT 0)
You know, you can just stop taking the diphen, you don't have to wait for the doctor's permission. I would not take it if I was having the side effects that you are. It's not a central drug -- there are other things you can't stop taking w/out talking to the doc, because they are managing your condition, but this one is not..... it's not like it's prednisone or something.....

It's good that you're drinking the boost to get more protein and calories -- you need them to heal. Remember, that counts as liquid too.... your liquids don't have to be all water.

I recommend writing down questions for your doctor before your appointment and bringing them with you (and writing down the answers too). It can be hard to remember things at the appointment as they can be stressful (and sometimes painful too).
Posted 11/17/2011 1:10 AM (GMT 0)
ikinda did stop takingit but the imodiumis starting to make me sleppy i just noticed that so four times a day not happenin i now have ineemas that are suppose to help with stomache pains.
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